Tuberous Sclerosis Patient Conference: Understanding TSC-Associated Neuropsychiatric Disorders (TAND)

For anyone interested in the upcoming conference by Tuberous Sclerosis Association, please find details of the event below.

This event is free of charge and anyone interested in attending can download the booking form, Tuberous Sclerosis Patient Conference booking form[92980], and email directly to Claire Kirk at Claire.kirk@tuberous-sclerosis.org

Date: Fri 25th Jan 2019

Venue: Post-graduate Centre, Belfast City Hospital

 

Agenda:

09.15               Registration & coffee 

10.00               Chair: Prof Patrick Morrison

10.00               Overview of TSC: Rachel Hardy (Belfast Trust)

10.15              Patient perspective

10.30               Introduction to TSC- Associated Neuropsychiatric Disorders (TAND): Prof Petrus de Vries (University of Cape Town, South Africa)

11.30               Coffee

11.55               Local Support for Autism: Shirelle Stewart (The National Autistic Society)

12.15               Emotional Regulation tools for young people with autism: Rachel Ferguson (Middletown centre for autism)           

12.45               Patient perspective

13.00               Lunch

14.00              Chair: Dr Deirdre Donnelly

14.00               Patient perspective

14.15               Managing TAND: current treatments & future research: 

Prof Petrus de Vries (South Africa)

15.15               Coffee

15.45               Getting the right support in School for children with Special Educational Needs: Fiona O’Donnell – SENAC (The Special Educational Needs Advice Centre)

16.15               Louise Fish – TSA (Tuberous Sclerosis Association) – conclusion of meeting

16.30               Panel Discussion

17.00               Close of meeting

Join us in raising Rare Disease  Awareness: Host a Rari-Tea event!

Raising awareness of Rare Diseases is crucial to every aspect of our work to improve services and the quality of life.  So in Spring 2019 we are launching our first Northern Ireland wide awareness-raising Campaign, aiming to make an impression in every town and townland.

Our approach is based on the popular “coffee morning” model, but our focus is on our favourite tipple, Tea!

We are partnering with local tea company, Infuse Artisan Tea, a Coleraine based business, who will be helping to lead the way.

The Rari-Tea events will coincide with the worldwide events marking International Rare Disease Day on 28 February, so will focus on the period from mid-February to mid-March (21st February – 7th March)

To get involved, just get together – a few individuals, an organisation, a business, a sports team – and hold a RariTea event. It can be a posh Afternoon Tea; or a mug of Builder’s Brew…just have some tea, and take a picture (or two) for Twitter, Instagram etc tagging @NI_RDP (twitter) or @NIRDPNews on Facebook, and use the hashtag  #RariTea

Register your interest via this link; show that we are #StrongerTogether, and help make a difference in 2019!

All money raised will go directly towards raising funds for a full-time Northern Ireland Coordinator who can help families and patients affected by rare conditions access the help and support that they often fail to receive.

Show your support this February and help make a difference to the lives of those affected by rare and hard to diagnose conditions.

To find out more contact us via email at info@nirdp.org.uk 

‘What Works’ Report from The Community Development and Health Network

 

To all those who attended the “What Works” event that ran by The Community Development and Health Network (CDHN) this summer, a copy of the report is now available to download via the link:

What works summary sept18[84424], or via the CDHN website, www.cdhn.org.

Please feel free to share through your own networks.

The CDHN would like to pass on their thanks to all who took part in these events; hopefully you found them useful, to those who were unable to attend, the report provides a useful summary of the day.

If you would like to discuss the report, or any of their other work, please contact Joanne Morgan on 028302 64606 or email: info@cdhn.org.

Palliative Care Talks: Children’s Palliative Care with Lucy, Sharon & Steph

It’s great to see that #StrongerTogether” is evident everywhere.
Open discussions about palliative care help demystify the misunderstanding that it is about dying when in reality it is more often about living.
Thanks for this inspiring insight into palliative care from those that are living the experience.
The ongoing drive to champion this speciality will improve services and most importantly the lived experience for patients and families.

Queen’s University Seeking Input by Those Affected by Rare Cancers

 

Are you someone living with rare cancer, or a carer of someone who is?

Are you interested in shaping and improving information and support for people living and working with rare cancer?

Then get in touch by the 1st June 2018 by emailing Julie McMullan

Queen’s University Belfast would value your input and expertise, in shaping and developing their research project.  At this stage they only need your permission to be named as an individual involved in the proposal, as we are currently at the initial stages of seeking funding for the research.

If successful in reaching the next stage of the application, Queen’s University will be in touch to invite you to share your input in co-developing the content and enhance the research design, to help make the project more worthwhile and effective in addressing needs and disseminate findings in a way that is of greatest benefit to you.

Your views matter so please get in touch to make your opinions count.

The project is funded by McMillian Cancer Support. Details of the scheme

The [ART] in Family: An interview with Susie Rea

Susie Rea, one of the recent winners at our poster competition, held during the March conference, is reaching out for participants who can help her with her photography work as part of her PhD studies.

Her focus is on those impacted by Advanced Reproductive Technologies.

We were keen to interview Susie to find out a little more about her, her studies and her work.

To find out how you can get involved in this fantastic project, read on!

 

Tell us a bit about yourself:

I am a photographic artist and PhD researcher at Ulster University in Belfast. My work explores the fault lines where medicine, technology and society meet.

 

What is the study about?

Advanced reproductive technologies (ART) present ordinary families living with genetic disease or disability with some of the most challenging decisions gripping society today. I am interested in the complexities of these decisions. To understand them, you must try to walk in someone else’s shoes, and think about their lives and their choices. The challenge of this project for me as an artist, is to create a series of photographic portraits that communicate some of these difficult issues to the viewer through the medium of the family photograph.

 

Who can take part?

The project will involve finding, photographing and interviewing ten families. The families who participate will all have dealt with these challenging decisions. They will be willing to discuss the decisions they have made publicly and will be comfortable with having a visual representation of themselves disseminated in the public domain. Some families will have actively chosen to use ART and others will, after consideration, have opted not to. The project is about both of these choices, the reasons for them, and the path eventually taken.

The term assisted reproductive technologies or ART refers to in-vitro fertilisation techniques such as pre-implantation genetic diagnosis (PGD) and pre-implantation tissue typing (PTT). The project is focused, in the main, on these new cutting-edge biotechnologies. However, prenatal diagnosis (PND) and chorionic villus sampling (CVS) are techniques that some families have opted to use instead of ART, as a result of their specific circumstances, and these families will also be considered eligible for the project.

 

What’s involved in taking part?

Participation is entirely voluntary. If you decide you would like to take part, every member of your family will be provided with a detailed information sheet and will be asked to sign a photographic and audio release form. It will be the responsibility of one parent/guardian of any children under 18 years of age, or vulnerable adult participants to give consent. If you agree to take part, I will arrange to meet, or speak with you, in advance of the photographic and audio interview session to introduce myself. This will be an opportunity for me to take you through the details of the project and talk through the consent to ensure that you understand what participation in the project entails. We will then organise a mutually convenient time for me to visit you at your home. The photographic session and interview will take approximately three hours and the format of the photograph will be a conventional family portrait. I want you to be yourselves, so there will be no need to dress up or tidy up!

 

Are there any risks?

The study involves a photographic shoot and interview session, so the risks in participation are minimal.

 

Who will benefit?

The artworks that will be produced from these sessions will be used for research and exhibition purposes. The consent form for the images and the audio interviews will therefore cover multiple media platforms. It is hoped that the exhibition will raise a positive discussion in the public domain about ART, families living with genetic disease, and the societal impact of these new technologies.

This research is part of a PhD which is funded by the Department for the Economy (DfE) and is being conducted on behalf of Ulster University. The study has been reviewed by the Ethics Committee at Ulster University in accordance with the University’s guidelines.

 

How do I find out more?

Susie Rea

PhD Researcher

Email: rea-s6@ulster.ac.uk

 

 

COUNTING THE COSTS FOR FAMILIES SURVEY:DEADLINE 18TH MAY

Contact: For Families with Disabled Children, is calling on mums, dads and other family members and carers of children and young people with additional needs or disabilities to take part in important research about family finances.

Counting the Costs 2018 is a repeat of their flagship research that has been carried out every two years since 2008. Last time a sharp rise was discovered in the number of families with disabled children going without heating and food. This was leading to too many disabled children and their families suffering ill health. As a result of the research this campaign achieved a number of improvements.

Responses to the survey will give us a unique snapshot of families’ current financial situation a decade on and whether it is getting better or worse.

By filling out the survey you will be helping to raise awareness and campaign for change – particularly as cuts to benefits continue to hit families with disabled children hard.

Contact need as many people as possible to complete the survey to help build a true picture of the current circumstances. This survey should not take more than 15-20 minutes.

The deadline to complete the survey is 18 May 2018. All answers will be treated confidentially.

Need advice on money matters? Get in touch via www.contact.org.uk

To take part in the survey click on the link below:

https://www.surveymonkey.co.uk/r/CountingCosts

 

Prioritising Retention in Randomised Trials

PRIORITISING RETENTION IN RANDOMISED TRIALS: CALL FOR PARTICIPATION

PRIORITY II is a research project that aims to identify what effects whether people stay involved in randomised trials. This research is important as trials form vital insight into future healthcare options and opportunities and high drop-out rates can mean that results becoming unreliable or unstable.

The survey aims to collect information from people across the UK and Ireland who are, or have been, involved directly, in designing, running, analysing, or taking part and/or staying involved in randomised trials.

To participate in this important survey click on the link: www.surveymonkey.co.uk/r/2GBVMHV

Or, for more information: www.trialforge.org/priority-two/

GRANTS AVAILABLE FROM FAMILY FUND

Family Fund provides grants and other forms of support for families raising disabled or serious ill children and young people (under 18). In 2016/17 the Fund supported over 4,000 local families with grants worth over £1.5 million.

We believe that families facing these challenges should have the same opportunities as others, especially those on low income. We consider all the family’s circumstances and the child or young person’s condition against our eligibility criteria – to ensure we reach and make a difference to the lives of those families most in need of our support.

We can provide grants for essential items such as washing machines, sensory toys, family breaks, bedding, clothing and computers, as we know it can be a struggle financially, emotionally and physically raising a disabled or seriously ill child. Our grants and other support help break down many of the barriers families face, improving their quality of life and easing the additional daily pressures.

All the information on our grants and other support is on our website at www.familyfund.org.uk but if you would like further information on our grants you can email us at info@familyfund.org.uk or call our one of our dedicated grant team on 01904 550055.

If you’d like to join in Family Fund conversations we are on Facebook, Twitter and Instagram.

EVENT NOTIFICATION: NORTH WEST FORUM, 19TH MAY

Join us for our North West Forum meeting on 19th May at The City Hotel, Derry from 11am-1pm.

All are welcome and is open to anyone affected by rare conditions, including carers and family members, for those interested in finding out more about rare conditions or for those in the health care profession.

For more information contact Sandra Campbell on Sandra@nirdp.org.uk or Tanya Boggs on Tanya@nirdp.org.uk